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NIH

Issues in Genetics

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Coverage and Reimbursement of Genetic Tests

Information about insurance coverage for genetic testing
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Human Subjects Research

Human subject participation for biomedical, clinical and social-behavioral research
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Genetic Discrimination

How Americans are protected from discrimination based on their genetics
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Regulation of Genetic Tests

How the federal government regulates genetic tests.
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Privacy in Genomics

How best to ensure that genomic information remains private
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Informed Consent

The rights of participants when consenting to research projects
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Intellectual Property and Genomics

Can a gene be patented?
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Genomics and Health Disparities

Ensuring that all populations benefit from the advances of genomics research

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Genome Statute and Legislation Database

A database of state statutes and bills from 2007-2017 U.S. state legislative sessions

Highlights

Remembering a genomics champion, Rep. Louise Slaughter

Louise SlaughterOn March 16, Rep. Louise M. Slaughter (D-N.Y.), author of the Genetic Information Nondiscrimination Act of 2008 (GINA), passed away at the age of 88. Rep. Slaughter was a strong advocate for genomics research, and her work on GINA helped create protections against genetic discrimination in employment and health insurance.

Improving science policy and healthcare through the NHGRI-ASHG fellowship

Nikki MeadowsThe health and medical care of Americans is greatly influenced by the policy decisions that guide genomic research. NHGRI and the American Society for Human Genetics (ASHG) are committed to strengthening the workforce of policy makers and analysts with genetics professionals through their Genetics and Public Policy Fellowship. The 2017-2018 fellow, Nikki Meadows, Ph.D., has just finished her first rotation at NHGRI. Learn about her experiences and what motivates her to pursue a career in science policy. 

New policy to protect research participants of NIH-funded research

Combination Lock with the Letters A-T-C-GThe 21st Century Cures Act, enacted December 13, 2016, strengthened privacy protections for research participants. Now, a new policy specifically requires additional protections for sensitive information collected from participants as part of federally-funded research. The National Institutes of Health (NIH) recently put forth this new policy requiring all NIH-funded investigators conducting sensitive, health-related human subjects research be issued Certificates of Confidentiality instead of by researcher request.

Learn about Genome Editing

Zebrafish and DNAThe American Society of Human Genetics and ten other organizations just issued a policy statement on germline genome editing in humans in the journal Cell on August 3rd.. Germline editing is adding, removing or replacing parts of DNA in the cells that will get passed down to the next generation. Want to learn more about genome editing? Check out our new resource here!" 

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